need some input

[grayton]

I have been reading the posts on this site for a couple of weeks, and finally decided to jump in.
I have a family history of celiac. My grandmother, aunt, cousin and cousin's children all have been dx'd. My mother more than likely has it, but never been tested. It wouldn't suprise me if I have it. I am anemic, and they can't ever figure out why. Dr.'s act like they don't even hear me when I mention celiac. My 12 yr old son is who I am really concerned about. He has vomited nearly every day for the past 6 weeks, diarrhea, gas, nausea, stomache pains. His pediatrician ran some celiac tests and promptly referred him to a ped. gastro dr. We have been waiting over a month for this appt. It's not until the 16th of this month.
In the mean time he is still vomiting and hurting and missing school. I understand that he needs to be on gluten for the tests to show anything but I am tempted to go GF to see if this helps him.
This is very frustrating and don't know what to do to help him.
Any suggestions?

[ostrich]

Hey Grayton! I'm glad you decided to hop in, though I'm very sorry for your troubles. Is the pediatrician running any other tests on him? Does he have any other food intolerances/allergies? He needs to stay on a normal diet prior to any tests. If he goes to a gluten free diet too soon his results will be skewed. And I'm sure you don't want to send your son through all that again. However, that doesn't mean you can't start him on a GF diet on the 17th.

In the meantime, make sure to keep him hydrated: juice, water, Gatoraid, all that stuff. If you can get the vomiting under control try switching to some bland, naturally GF foods, like eggs or (plain) baked chicken. I would also pull him from school until everything calms down.

By the way, have you gotten tested or are on a GF diet?
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[cruelshoes]

Hi, Grayton. No parent ever wants to be in your shoes. Specifically what bloodwork was run, and what were his resilts? Can you get a copy of the lab work?

I would recommend strongly against going GF before doing the testing. Pretend for a minute that he does have CD. The longer he is GF before testing, the less likely you are to get a diagnosis, because the body begins to heal. The door begins to close very rapidly once gluten is removed. What will happen if he does improve? Will you want to get a diagnosis? If you do, you will have to introduce gluten again, which may bring all his symptoms rushing back. Will your DR give you a diagnosis of CD based on a dietarty trial alone? Most will not.

If your son is in the public school system and you want to get a 504 plan for his celiac disease, you will need to have a diagnosis.

Poke around the sticky threads at the top of each forum. There is lots of good information to be found there. Ask more questions as you have them. We are here to help you through this.

As Ostrich mentioned, you (and your Mom) both need to be tested for CD. Unexplained anemia is one of the leading causes of a celiac diagnosis. This is due to the malabsorption that occurs with damaged villi.

I know it is hard. I was in your shoes only 2 years ago, and I knew I had to keep feeding my son poison to get him diagnosed. In the end it was all worth it as I see how he has grown and thrived since the diagnosis.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[grayton]

The tests results that they ran at the peditricians office were:
Anti-Gliadin IGA they said was okay
Anti-Gliadin IGG elevated
tTg okay
Anti iga negative
immunogloubin A QNO serum low

I may have some or all of these tests screwed up... they were reading it all off so fast it was hard to keep up and I really didn't know what they were talking about at the time. After being on this site, I am becoming a little more knowledgable about all of this.

I have not been tested yet and am not on the GF diet. The Dr.s don't think I need to be tested because I don't have chronic diarrhea. Which I now know doesn't mean a thing. I get run down very easily and then catch the first bug going around. I have had stomach trouble off and on all my life. A couple of years ago was treated for h pylori. My red blood count is always low and platelets are smaller than they should be. Infertility, was a problem when trying to get pregnant. Never used any birth control, but after my son was born never got pregnant again.
Hemotologist and rheumotologist I have seen believe I have something wrong, but can't figure out what.
I figure if I can get my son dx'd with celiac, maybe some one will listen to me. I just feel bad for him, his stomach hurts everyday.

[aklap]

Hi Grayton,

Welcome to the board!!

Yeah - what Os & Colleen said

I agree that you and your son [as well as the rest of the family members] need to get tested. Like Colleen said, unexplained anemia is a HUGE red flag when it comes to CD.

Be sure to check out Our Thread on CD Symptoms. You just might find a few more symptoms...

Also, check out Our Thread on Celiac Blood Tests & More Diagnostic Info. This lists the complete CD blood panel.

Here's an Index to all the Helpful Info Stickys

Good luck at the Dr. appt!! Please keep us updated on your family!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aklap]

You might start looking at Non Celiac Gluten Sensitivity...it's all the "fun" of CD, but with out villi damage to prove it.

I've got lots of info around here on NCGS. Do a search for Lewey...you'll find lots of info.

gotta go...
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[ostrich]